EmilyK

So DS is on the Augmentin/Azythromycin combo with good results for OCD and anxiety and appetite, but I don't see much improvement in attention, processing speed, math. Is there anything to do to help that along more quickly? Been on Augmentin since early Sept with one week break in Nov and on Azythromycin since Oct. He also takes, D, melatonin, omega 3's, probiotics, etc.

Is the lump a gland or a muscle spasm? I'd try different approaches depending. Emily

We've already booked with an ENT but the appointment isn't until Dec 19th for initial intake Definitely getting those buggers out! But I wish we could get a little better between now and then.

My son without PANDAS has had two ear infections, infected adnoids, and tonsillitis sequentially since Sept all fought with abx such as Biaxin, Amoxicillin, Augmentin and yesterday he started again with the nose congestion. So my poor PANDAS DS doesn't get an exposure break. We do probiotics, omega 3s, zinc and vit C, vit D, B vitamins, Juice Plus supplements, whole food/chemical garbage free food, low sugar and I'm probably forgetting something else we do. Allergy tests come up negative but I can't wait for him to also see Dr. B in December. There has to be something wonky with his immune system, and I wonder if the myco-p is truly gone. The infections seem to go from ear to nose to throat and around again. He's a good sport and hardly ever complains, but I want this to stop. We've tried periods of gluten free and dairy free to see if it improved - no luck. What else could we be trying? We have had one success - treating the myco-p in DH got rid of his Restless Leg issues that weren't responding to restless legs med. It was like his right leg was having a seizure at night - GONE.

Got it - good read LLM

That sounds exactly like what happens to DS. I'll have to dig into that topic a bit more. thanks

Does convergence insufficiency cause letter reversals when reading?

All four of us were positive with high numbers for past infection too. Zith, Doxy, and Biaxin depending on the presentation (ears, joints, lungs/throat) and 14days - a month's worth depending on the data.

Bravo!

DS' sensory symptoms disappear with appropriate antibiotic for PANDAS/PANS and come back with flares.

love it

I'm not sure. Our IGGs were higher (between 5 and 10) but our IGMs were lower; and we all were treated. Since it's been several weeks, maybe check levels again?

Can you get Biaxin, Doxy, or zithromycin?

I only know of the blood test. I second the raw honey suggestion - great for the throat and cough symptoms. Good luck!

Dr B wanted us at least one month of abx and no, Augmentin wasn't it (that was great for the strep). We had Biaxin (myself and youngest), doxycline (husband) and zythromycin (oldest - PANDAS). So far so good.

My sore throat and cough were mycoplasma. Have they checked for that?

This is great! Can we share this more broadly? I'm thinking school nurses and school psychologists - we have a statewide list I could share with. thanks, Emily

That's true for my son and why I say he's not really got ADHD but rather looks like it in a flare up. Some of the hyperactive movement turned out to be complex gross motor tics. He also would try to outrun the tics - literally racing around - as a way to self-manage.

Is she still on Zoloft? I hear and read that SSRIs are not always effective and sometimes harmful with PANDAS. I also had a family member on it and looked like they were having strokes until they got off of it. When you say incoherent speech and weird gait, it reminds me of that. She's so lucky you caught this in two days! My son was adopted from Guatemala in 2006 with onset in 2010. Like KO's mom, no doctor found it, I did with help from coworkers. But it took us 18 months.... Good luck and I LOVE your attitude

My son is on Augmentin plus Zithromycin for the myco, so seems like you guys have the right stuff to kick it if that crops up. Now the younger non-PANDAS has an ear infection and adnoiditis....grrrr.

This gave us very practical help in the classroom: OT and PANDAS

From what I've read they are closely related but not the same, and it was the understanding of SC that helped docs recognize the PANDAS. Push back, in my opinion, comes from the lucrative business of psych drugs vs antibiotics.

Excellent - thank you!

I often have Biaxin for sinus and bronchitis issues. My trick is to keep my belly full nibbling all day and super hydrated. I'm on it now and drank no less than 4 mugs of chicken broth yesterday to stay hydrated. I find it cuts the horrific taste in the mouth which contributes to lack of appetite. I also use digestive enzymes. So lots of soups and meat broths if you can. Lots of probiotic too.

My son is on prednisone and doing ok. He has a two week taper. I've had at least 10 times in my own life with a prednisone burst or taper for acute asthma. My pattern is always this: Days 1-2 crazy high energy and no sleep - looks somewhat manic, Days 3-4 super cranky and short, Days 5-7 cry at the drop of a hat. Then I'm off and it's a non issue. I know from my mother's experience that if you quit a steroid burst with no gradual taper it can indudce psychosis. WEAN off!